Behaviour – a dirty word?

Around this time last year, I wrote this post – High School Visits – about our experiences of looking around high schools for BB, and how, although it wasn’t about him, I began to think about LB’s future needs and how they would be supported by the schools on offer. I drew the difficult conclusion that the boys may well end up at different secondary schools.

BB – my first born, my baby – is approaching teenage-hood fast. He’s officially in the final year of primary school and now we really do have to choose a high school for him despite this all having happened far too quickly (and me not being ready and wanting to weep into my cup of tea). We are re-visiting schools A and B from last year’s post as well as adding school C into the mix, to help us choose before the October deadline.

It’s looking like a choice between B and C for BB but in reality, he could go to any of them and I’m sure he’d be fine. Although we are going to have some worries about catchment areas and places filling up, the reality is that the world is BB’s oyster. All options are open to him and its largely going to come down to preference.

However, the more schools I view, the more concerned I become that LB will not have such a choice. The picture I’m getting is that schools are inclusive to a point, but not beyond. None of the schools we have visited are ‘selective’ though one is independent. They are all therefore, theoretically, inclusive. However, when you scratch even lightly at the surface, you soon realise that they are not. What they are is inclusive with exceptions, which is pretty weird when you start to consider it more deeply.

What I feel they’re really saying is that some special educational needs are more acceptable to them than others. That if your child has Dyslexia or Dyscalculia or Autism (certain presentations only), or a physical disability, perhaps a mild vision or hearing loss, they’re ok. They can come in. However, as soon as there’s a whiff of the unspeakable ‘b’ word, no thank you very much.

I touched on this in last year’s post – that some schools see behaviour issues as selfish, disruptive to others, and stemming from a flaw within the child displaying them. I can tell they do, from the way they lean forward conspiratorially when they mention it, lower their voice slightly, just automatically assume that you will agree with their view point that we don’t want Them in This School. It is always delivered in such a matter of fact way that you know the deliverer can’t possibly envisage a scenario where the child with ‘the behaviour’ is anything other than a huge problem, to be avoided at all costs.

Today, we presented smartly, we talked about BB with his good academics, his good social skills, his extracurricular activities, his all-round sunny disposition. We must have seemed a safe bet for the ‘not in our school’ behaviour chat. We evidently didn’t present as the sort of people who would have another child with behaviour challenges. But we do. That’s because there are many reasons for a child to struggle with their behaviour and generally it is not that they come ‘from a bad family’ or whatever it is people assume.

I get that schools want to cultivate a certain image and maintain certain standards. I get that if it is a fee-paying school, other parents will expect certain learning conditions for their children that perhaps don’t involve disruption from a classmate.

However, as a parent of a child with behaviour challenges – which, incidentally, he gained from having a really shitty start in life (very much not his fault) – it all feels pretty exclusionary. The reality is that neither school B, nor school C will be welcoming towards LB and his specific set of needs. Grizzly assures me it’s fine, because we will consider each boy individually and attempt to get them into the best school for them.

While this is all well and good, another part of me wonders why it is ok for BB to have three good options available to him but LB, so far, has one. It makes me feel that his background continues to limit him because as hard as we work to improve things for him, and as prepared as I am to fight for his needs to be met, he isn’t going to have the same choices. For me, a school that talks about behaviour like it’s a dirty word is never going to be appropriately understanding of it. Those schools may be inclusive on paper but they aren’t in reality. And if they’re not truly inclusive, they’re not truly an option.

Wouldn’t it be refreshing if you went to view a school and when they talked about behaviour they said something along the lines of being committed to understanding the underlying roots of it? Something about how they see the potential in every single child, no matter how they present? How they are committed to tailored approaches and working in partnership and thinking about the things children can excel in, rather than excluding them for the things they can’t help? What if they said every child is a success waiting to happen?

What if it wasn’t just the occasional school, but every school which had that opinion?

What if, and imagine this, children with any additional need could be supported to have an equal chance at life?

What if we ditched this weird concept of a hierarchy of acceptability of need? Stopped thinking that struggling with literacy was in some way more okay than struggling with emotional regulation. As a society we don’t appear to blame children who can’t read – it’s pretty obvious to most that it’s due to brain differences or lack of appropriate support. Why, then, do we think it acceptable to pin the blame for a children struggling to regulate their behaviour on the child themselves? Why don’t we think it’s due to brain differences or lack of appropriate support for them?

I suspect it’s just more convenient this way. Children who can’t read impact other people a lot less than children who struggle to regulate their behaviour. That’s an unpalatable but true fact. Children with behaviour challenges can disrupt classrooms, they can be hard work, they can hurt people, they can turn people grey, but do we really think that they are less deserving or worthy of the right support than a child with literacy difficulties? And if we do, what exactly is the justification for that stance?

Our recent visits to schools would suggest that the prevailing viewpoint is just this: that children with behaviour challenges are less deserving of a good education. As a society, we seem to think it’s acceptable to keep them away from others, to isolate them, to exclude them, to send them to schools where restraint is regularly used and when all that fails, lock them up in an Assessment and Treatment Centre (ATU).

I’d say we’re failing them.

We’re thinking of the majority and excluding those who don’t conform enough. Shouldn’t we be thinking of each child as an individual? The herd mentality is not really any good for anybody – just one approach is never going to work for all. But if we had many approaches that could be moulded and tweaked for individuals as needed – might that not be inclusive?

It’s really about a shift of attitude. These children with behaviour difficulties aren’t at fault – they have neurological or emotional or sensory or psychological reasons behind their behaviour. We are not affording them empathy. We are not getting things right for them. Schools are not getting things right for them. Inclusion is not including them.

These children are some of the most vulnerable in our society. They are already at risk of poor life outcomes so why do we think its ok to alienate them further?

I don’t know the solution but I know I’m pretty fucking mad about it.

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Is Dysregulation Rocket Science?

This is the question that has been playing on my mind this week. I’m pretty sure that dysregulation is not rocket science, but I do know that, as a concept, it seems exceptionally difficult for others to get their head around. For me, the fact that people can’t understand dysregulation is a much more difficult conundrum than dysregulation itself. How could it possibly be so difficult to understand? But it seems it is.

So I suppose a good starting point is what I take ‘dysregulation’ to mean. For me, it is about emotional and behavioural balance. When things get out of balance – because we are worried, upset, scared, angry – we are dysregulated. Most of us are able to regulate ourselves to stay within balance but children who have experienced trauma, such as LB, are not always able to do so. LB struggles to recognise that he is out of balance – physically (see Interoception ) or emotionally – and therefore can’t even begin to bring himself back into balance again. He has to rely upon tuned-in adults, who are adept at reading the outward signs of his inner turmoil, to help him find ways of getting calmer. That might mean them giving him a change of activity, using a sensory strategy or his calm box, encouraging him to rest, giving him food, encouraging him to go to the toilet or perhaps, generally reducing the demands made of him for a period of time. At home, that might mean allowing him to have a tele-tea, helping him with everyday tasks such as dressing (even though we know he’s capable of doing them), staying at home/ not taking him to places that require lots of listening or co-operating, skipping tricky tasks like reading.

Dysregulation can be hard to manage, so often it is the environment which needs to accommodate the child who is struggling, rather than expecting them to be able to make better decisions. Part of understanding what dysregulation is, is seeing that a child cannot manage more at the present time and therefore, as grown-ups, it is us who need to do something different. If a child cannot cope with formal learning today, perhaps we could allow a sensory or play-based approach to learning instead. If a child cannot manage to sit still today, perhaps we could do their lessons outside. If a child cannot cope with assembly, perhaps they could skip it and do something they will enjoy instead.

To me, this is instinctive. To schools, it doesn’t appear to be. There seem to be concerns about rewarding poor behaviour or setting precedents or missing chunks of curriculum. It is hard to get across that learning (of the traditional, reading and writing kind) is not physically possible while dysregulated. It is hard to make teachers see that differentiation applies to behaviour too. We cannot say, “but key stage 2 requires more sensible behaviour’ if the child in question is functioning at an emotional age of 3 or 4. We cannot ask children to do things they are not physically/emotionally capable of doing. Yet, we are.

My biggest frustration, I think, is the school staff’s inability to identify dysregulation in the first place. They see spikes in behaviour, they see oppositional, they see defiance, they see absconding, they see aggression. All those things are dots, that when joined up, reveal a picture. That picture is dysregulation. Why can I see it, but they just see unrelated dots?

Why does absconding not equal flight? Why does aggression not equal fight? Why are they blind to a child’s distress? Why do they think that punishing these behaviours is appropriate?

I don’t know why. I wish I did. This is what makes me think that the concept of dysregulation is a harder concept to grasp than I think it is.

Schools not being able to identify dysregulation, is a very real problem because they then do not respond in the most therapeutic way, often using approaches that will inflame, escalate, worsen, instead. LB had an incident last week where school clearly got too much for him and he ran out of the classroom onto the playground equipment. To me, the running is a clear sign of him trying to get away and him needing a minute. Instead of leaving him alone until he was calmer, a member of staff chased after him and demanded he get down at once, in a stern shouty voice. So he told her he hated her and to shut up. Then he got into trouble for using inappropriate language.

I mean, come on people. Had they have stopped and thought about what his behaviour was communicating – that everything had a got a bit overwhelming and he needed a break – they could have checked their response. They could have applied the strategies in the psychologist report (that they used school funds to pay for yet aren’t heeding). Had they have left him a minute, he would not have used any ‘inappropriate’ language at all. By not recognising his dysregulation, they escalated the situation and blamed him. This isn’t okay. It is also extremely frustrating to somebody such as myself, who has gone to great lengths to explain LB’s dysregulation about a gazillion times before.

School have got better at linking some dysregulated behaviour to triggers, where the trigger has been a specific situation immediately prior to an outburst e.g. a disagreement with a peer or finding a particular piece of work difficult, but I am having a devil of a time getting them to understand that big events such as a school residential or transition to the next class can lead to a generally dysregulated period. I can’t make them understand that an event last week can impact on behaviour today, as could an event in three weeks’ time. Admittedly, if the event is nothing to do with them, I can’t expect them to be psychic, but everyone knew about the residential and I laboured the possible impacts I thought it could have. I can see them looking at me strangely though, as if I’m being obtuse by trying to link him staying away from home last week with him refusing to do his work today. I can’t make them see that emotions and fears feed behaviour. If something has happened, such as a residential, that has such magnitude it shakes the core of your own sense of belonging and safety, ripples from that will be felt across the days and weeks before and after. The ripples will manifest as tricky behaviour. They will mean the child is generally more sensitive and less tolerant. They will not be able to cope with the same demands, as their being is busy dealing with the aftershocks.

I don’t know how to explain that in another way that is any clearer. It feels pretty clear.

When you truly understand dysregulation and the specific ways that it impacts a specific child, you can predict how big events might impact them. It was so obvious to me that LB would behave as he did the day after the trip, that I didn’t think to spell out my predictions to school – I assumed that after all the training and meetings, it would be obvious to them too. But it wasn’t. They seemed flabbergasted that his behaviour had suddenly taken a dip and disbelieving when I linked it directly to the trip. Instead of two plus two making four, it’s as though computer says no.

Something is going fundamentally wrong. I don’t know whether it’s a refusal to hear it, whether I (or PAS or the psychologist) still haven’t got the explanation right, or whether it’s more sinister. If a person still, deep-down, believes a child is behaving a certain way because they ‘are naughty’ or because there are flaws in their parenting, perhaps they just won’t accept that dysregulation exists. Is that why they don’t join the dots? Because they don’t actually believe they’re linked by anything more than wilful disregard for school rules?

I don’t know, but the lack of certain members of school staff being able to identify LB’s dysregulation, let alone deal with it appropriately has made me raise some serious questions.

It’s been a long week. I have been extremely frustrated and exhausted by being here again and doing this again and saying the same things, again.

And then I met the new Head Teacher.

Wow. What a lady. For the first time, in a very long time, I didn’t need to educate an educator. She listened to me, she pre-empted most of the things I wanted to say and positively encouraged me speaking up and speaking out. I think she might have arrived just in the nick of time, before I lost the plot with school entirely.

Here’s to the penny finally dropping. Keep your fingers crossed guys, I may have just happened upon a very much needed ally.

 

 

 

 

 

 

 

Hysterical

One of the biggest problems, I find, with attempting to get other people to understand the emotional and behavioural needs of your child with SEMH issues is getting your points across without those people drawing the conclusion you are hysterical. I’m pretty sure I’m not being paranoid about this – I have read it frequently in people’s body language, facial expression and even in their choice of words. Here she goes again, being all over-anxious and fretting unnecessarily, they think. When I say people, I mainly mean teachers, though this isn’t exclusive to them.

When you do have a child with SEMH issues, you become adept at predicting their triggers. You know the sorts of situations that may challenge them and, in an attempt to parent them the best you can, you try to anticipate potential problems in advance so that tweaks or alternatives or supportive measures can be implemented to minimise their stress. For me, that just makes good sense. Why leave a child to flail and panic and worry, when you could prevent that with a bit of forward planning or heightened awareness? Obviously you can’t predict everything, but where you can mitigate potential problems, why wouldn’t you?

It’s this attitude that brings me to teachers, raising possible problems with them in advance of them happening. Unfortunately, what I see as a wise anticipation of issues is more often than not interpreted by them as over-anxious parenting. I’m pretty sure they have conversations about how I’m creating a self-fulfilling prophecy and bringing LB problems where he didn’t have any before. “Her anxiety will be rubbing off on him,” I can imagine them whispering, “It’s not him, it’s her”.

This has come to the fore because next week LB is going on his first residential. I do not feel it is excessive to say this is a big deal for him. Staying away from home without any of your family would be a big deal for most 7 year olds but is even more so when your early life has involved moving from place to place: staying away might trigger all sorts of difficult feelings and anxieties, not least whether you will actually return home again. This is compounded by embarrassment that you wear pull-ups at night when your friends don’t and the trip will involve you staying up way beyond your bedtime; a time that you already struggle to stay regulated for in your own home.

So yes, I think there are some very real concerns about the trip and in an attempt to help LB as much as possible, I have been pro-active in discussing my concerns with his teachers. I wanted them to be aware of his continence issues so they could help him subtly. I wanted them to know his bedtime is early so that when he starts to spiral they will be able to recognise it as dysregulation due to tiredness, not bad behaviour. I wanted them to be aware of the reasons why a trip away from home might trigger feelings from his past. I wanted them to be aware of all this so they could support him through it.

I thought this was all tickety-boo. They had seemed to listen and had been reassuring about how they would deal with it all.

However, as the time draws closer, LB’s behaviour is beginning to spiral. I have noted it at home. They have noted poorer listening, poorer compliance and an increase in fidgety behaviour at school. LB has started saying he doesn’t want to go on the trip. To me, it is obvious he is anxious about it. This anxiety is being expressed through the changes in his behaviour.

School, on the other hand, are scratching their heads about this change of mood. Why is he all of a sudden throwing things and threatening to kill his TA, they wonder. To help them out, I’ve tried to make the link between the two things for them. This has involved me having to elaborate on why exactly the trip might be anxiety-provoking now, before it has even happened. The problem is that I don’t think they’re really getting it, so I find myself harping on more than I’d really like. The more times I even reference the trip, the more convinced they become that I am a hysterical, over-reactive mother.

This morning, as a small part of the coherent explanation I was trying to weave on the spot, I mentioned that LB has only ever stayed with us or his grandparents (I thought the ‘since he’s been here’ part was obvious) so staying somewhere else might be quite triggering. “He won’t be alone in that,” his TA says, “many of the children won’t have slept anywhere else”, as if I am being quite unreasonable by making a point out of something common to all the children. What I want to say is something along the lines of, “Yeah, but, before these other children moved to their forever home, did they live with foster carers who randomly took them to other houses for respite, with people who were not always registered as carers? Did they get left there without explanation for inordinate periods of time? When they came to their forever home, were they just dropped off by people they had lived with for several years who would then just disappear never to be seen again? Before that, were they suddenly removed one unpredictable day from the family who conceived and gave birth to them? Where they? No? THEN IT REALLY ISN’T THE SAME!”

Obviously I said no such thing, smiled sweetly, took a deep breath, and attempted again to explain things in a calm manner that might actually get my message across. That’s how it was from my point of view anyway. I suspect that from theirs, they thought, “Oh, she’s still going. I’ve covered off that point so she’s trying to concoct more. Definitely hysterical.”

What’s infuriating is that when you don’t feel heard, there aren’t many options. I don’t believe in shouting or being rude (it’s all about the long game and building relationships) so I’m really left with repeating myself or trying to find other words or other arrangements of words to get the ideas to strike home. I often find myself reaching for more extreme or more shocking examples when the tamer ones don’t resonate. It is as though I have to escalate the severity of what I’m saying to get my messages heard. The thing is that if they are still not heard, I am surely seen as increasingly hysterical.

I suggested today that we must monitor LB. Yes, some anxiety is to be expected. But as he is already at threatening to kill people levels, perhaps we don’t want him to escalate much more. Perhaps, if he does seem to be spiralling out of control, we might need to come up with a plan to soothe his nerves. Perhaps, and I was just throwing things out there, we could reassure him that we would not make him stay somewhere he doesn’t want to (trust and all that) and we could offer to pick him up from the day-time part so he can sleep where he feels safe: at home. Though, to me, this makes perfect sense, I can see that school find it an outrageous suggestion – the kind that would only be made by a mother struggling to loosen her apron strings. “She doesn’t even want to let him out of her sight for one night, for goodness sake,” I can imagine them commenting. The response from the TA only confirmed my feeling they had been talking about me in this way – “Mr Teacher doesn’t want you to do that,” she said, when I suggested it.

It really is quite a challenge to remain dignified in these situations. It is a constant balance between persisting in getting messages across and presenting like a non-hysterical, credible source of information. I do a lot of internal swearing.

I understand that they have taken hundreds of children on trips and that every parent gets a bit worried about it and that they will do their best to look after LB and that if he gets upset, they will deal with it. I know they haven’t had to call anyone’s parents before, but, if we’re honest, that’s more of a gauntlet than a reassurance. When they say, “he’ll be fine,” I hear, “we’re not taking this seriously enough”. If only they could acknowledge this is a huge deal for him, we’d be grand.

Obviously we are doing all the prep stuff and giving reassurance at home. LB does seem to be coping better now he’s realised they aren’t camping outside (you really can’t anticipate all the issues) but I am typing this outside of his door as we have another tricky bedtime. I intend to monitor him/ his behaviour over the weekend and should things have worsened, I shall be back at the classroom door, making myself look hysterical again. And I don’t really care what Mr Teacher thinks about it – should LB be crying and hanging from my leg when I drop him off for the trip, I will be picking him up at bedtime.

As tempting as it is to just pack LB off with them, with little instruction, to let them deal with whatever happens themselves, I can’t shrug my shoulders of all responsibility. He’s our son and it’s our job to meet his needs as best we can. If that means occasionally having to overrule school and to lose street cred over being anxious parents then so be it. LB’s needs are paramount and if that makes me hysterical, then I guess I am.

 

 

*The irony of me writing last week about how much I love the school is not lost on me. I should have known that singing their praises would nudge the universe into trying to prove me wrong

**The word ‘hysteria’ derives from the Greek word for ‘uterus’, suggesting that to be a women is to be hysterical; that being overly emotional is an intrinsic failing of having a womb. Marvellous. I wonder whether any of the dads out there experience a similar thing when they have worries or if this shrugging off of concerns is more prevalent when they are raised by mothers?

I’m not really trying to make a feminist point, I’m genuinely wondering.

 

 

 

 

 

 

 

Holi-yay or Holi-nay?

I have spent much of the past week wondering whether we were brave or foolhardy when we booked a holiday to the Finnish wilderness. Many adopters have quickly learned that familiar places and familiar routines equate to smoother breaks with their children, so either return to the same tried and tested venue or go away in their caravan (home on wheels). It is quite possible that those people are wiser than us.

However, as with most aspects of life, we are somewhat prone to doing something different to everybody else and wandering off on our own merry path. On this occasion, that wander led us to deepest, snowiest, most remote Finland. We were so deep into Finland, we could have walked to Russia. There is no real relevance to that fact, apart from to illustrate how remote our location was.

It seemed like a good idea when we booked it.

We’d been to Finnish Lapland before and had an amazing time (see A Magical Adventure? ). Of course it had not gone without hitch, but the life-enhancing experience of seeing The Northern Lights whilst husky-sledding in temperatures of minus twenty-something had obliterated any more minor concerns. The boys crave adventure and I am repelled by any water-based activities, so winter adventures suit us well. We saw this trip, advertised through a reputable company, with amazing reviews, and billed as a ‘family adventure’ and thought it seemed perfect.

However, warning bells rang on arrival, when we discovered there had been a stomach bug in our accommodation the previous week and our arrival would now be delayed due to a ‘deep clean’. Hmm.

Trying not to be paranoid, we got on with it.

The first thing we noted about being on holiday with a new group of twenty or so people, was that Little Bear’s behaviour stood out as different. I suspect it always does, but usually we are with familiar people who know and understand him. Usually the difference doesn’t affect us. But there, with strangers, we were more aware of the transparency of people’s thoughts. ‘What is he doing?’ they thought. ‘Why is he rolling around in the snow when everyone else is standing at the coach stop?’ ‘Why has he wandered off when the guide is explaining the intricacies of husky-husbandry in heavily accented English?’

Again I found myself caught between wanting to enlighten them and wanting to protect Little Bear’s privacy. I said nothing. I attempted to parent as usual.

A big problem, with a holiday such as this, is the impossibility of sticking to familiar routines. It wasn’t self-catering as our UK holidays always are: we were trapped by hotel feeding times. As dinner was at 6pm, the time Little Bear usually begins his bedtime routine, things were bound to be harder than usual. Clearly, it is far from ideal to ask a child who struggles with flexibility, to be flexible about his meal and bedtimes when they are usually very strict with good reason. I suspect the reason we have generally faired quite well on UK breaks is that no matter where we are our familiar routines have anchored us. In Finland, however, we had a tired, hungry and understandably dysregulated bear at points during the first days.

We tried to be resourceful – making sandwiches at breakfast time so that we had more flexibility later on and Little Bear could skip the dining hall altogether if needed. It sounds a bit ridiculous but because Little Bear’s behaviour is so inconsistent, it is difficult to predict and I don’t think we were as good at spotting that this was likely to be a problem in advance as we should have been because there are times when Little Bear would be able to cope with more flexibility.

It is ironic really, that I am becoming a person who is better at solving problems after they’ve occurred than predicting them beforehand, given my propensity towards morbid-thinking. I suspect that in an attempt to be easy-going enough to attempt wilderness holidays, I have had to relax the side of me which anticipates myriad problems. There is certainly a freedom in just dealing with things as and when they occur but the downside is I get to berate myself for not being more prepared.

Anyway, after several nights of lengthy and emotionally challenging bedtimes (a child continually moving and wriggling and verbally scribbling to keep themselves stimulated into wakefulness is nothing if not a little insanity-inducing), we changed our approach. I realised that freedom on the outdoor journey from the dining hall to our room was too difficult for Little Bear at that time of night: he couldn’t cope with the demands to bring himself back inside when we asked, triggering escalation. This was akin to our issues on the school run which have been solved with holding hands and keeping Little Bear close – not putting him in a position where there are any demands – and this worked on holiday too. He was also helped by having his pjs and toothbrush etc. all laid out in the right places for him so he could complete his whole routine without any adult prompts (we agreed to do it that way in advance of dinner). These tweaks led to vastly improved bedtimes.

Although the change in routine wasn’t ideal, there were still solutions available to us. It was good to know that. Even when stranded in the Finnish nowhere, difficulties didn’t have to become crises.

The other mistake we made was forgetting (I know, honestly!) about the need to establish clear new rules in any new place. Little Bear’s bed was up on a mezzanine above ours. We could hear him up there but couldn’t easily see him. Evidently, being away from grown-up eyes meant that Little Bear set his own rules of what was permitted on the mezzanine, none of which were conducive to sleeping. Once I’d figured this out, I realised he would need one of us to provide supervision up there, much like we’d had to do when he was small and made no association between bedtime and sleeping. Like then, he did not appreciate my presence (it curbed his fun no end) and I was insulted, threatened and hit. However, I knew it was important to persevere and not be bullied back downstairs by a six year old. It wasn’t any fun and it took ages but the next night, he lay down and got straight to the business of sleeping.

It was reassuring, in a strange kind of way, that we had enough tools in our portable therapeutic toolbox that we could have a good go at resolving these issues wherever we were (even if they could have been avoided by better forward-planning).

As many people will already know, there were further problems with the holiday, though they couldn’t have been reasonably predicted.

On day three, Grizzly and I both woke up with The Bug. Yes, the one they had supposedly deep-cleaned away. It knocked us both off our feet for the whole day. Clearly this was undesirable.

I have always been very anti-cruises because every time I imagine a huge ship with all those people on board, my first thought, like a weirdo, is of Norovirus. I could envisage a nightmare scenario where everybody gets confined to a tiny cabin, shitting and vomiting, for the duration, and that, my friends, does not sound like fun. Yet here I was, in basically the same scenario, in a snowy forest in Finland.

And yet… I didn’t feel the depths of despair I thought I might. I was grateful Gary was with us to look after the boys and she hadn’t been struck down – yet. It was strangely nice to spend some time with my husband, even though we felt rubbish, and, outside, it was snowing. There could certainly have been worse bedside views.

The next day, we were okay and managed to go on our planned excursion. I was grateful we had bounced back quickly.

By now, Gary was ill and couldn’t join us. With the majority of the wider group dropping around us, this seemed inevitable. While I was sad she was missing out, I was grateful she wasn’t actually sick – things could certainly have been worse.

That night, Little Bear settled well for bed. He’d been asleep half an hour when he awoke vomiting all over his bed. Evidently things were going from bad to worse. He was now in my bed and I was relegated to the mezzanine with its broken light to read my book by torchlight. And yet…

Despite having vomited so much the mattress was beyond salvation, Little Bear’s brown eyes peeped from under my duvet, glinting with mischief, and he launched into an hilarious rendition of Baby Shark. Of course I didn’t want any of us to be ill on holiday but when Little Bear is ill, I’m always reminded of his resilience, Marine-like toughness and general gorgeousness.

On this occasion, being poorly had also made him feel emotional and loose-lipped. He instigated an in depth adoption conversation about how scared he felt when he first met us (“because you’re both so tall”), how he really hadn’t wanted a brother (“I wanted to punch him in a private place”) and how angry he was with us for having ‘taken him’ from his foster carers. He has never managed to verbalise any of these things before and they certainly would go some way to explaining some of his behaviour. Although these are difficult things, I would far rather they were expressed than not.

I found myself wondering whether if we had not found ourselves trapped inside a wooden cabin in Finland by a vomiting bug, we would have had this (potentially progressive) conversation at all.

We talked for a long time. It felt like the kind of chat that would open things up and move things on.

All of us did a really good job of maintaining our humour for the first days of The Bug. Considering the circumstances, things really weren’t as bad as they sound because we were together and writing and reading kept me sane. I can’t lie though, by the end of the third day of being stuck inside the cabin, I was done. Beam me up. Take me home.

When we eventually got back, I felt I may have been released from prison which is obviously not the vibe you’d hope for after an amazing holiday. The getting back, with a partially well, partially unwell, highly dysregulated Little Bear in tow was not particularly easy. A big kick off several thousands of feet in the air, in a confined space is not any fun and is one way of calling into sharp focus the level of challenge we seem to be taking for granted.

The Bug was really unfortunate. Bad luck. But aside from that, was it worth it? Did the pros outweigh the cons? Were we brave or were we foolish for attempting such a holiday in the first place?

There were some clear pros: husky-sledding, meeting the reindeer, snow, sledging, snow, beautiful scenery, the Northern Lights, Big Bear discovering a love of cross country skiing and more snow. We couldn’t have got any of that here and the boys certainly gained from those experiences. I think there are even some perverse pros in having survived such an unwelcome scenario and coming home in mostly good humour: there is nothing like overcoming a challenge to make you realise what you can do.

I shall certainly not be booking another holiday abroad any time soon and long-haul is absolutely out of the question for some years yet (unless we wish to cause some sort of emergency diversion situation) but would I do it again? Yeah, probably. Not in the same place, obviously, but I would take Little Bear somewhere new again. I don’t know if that’s sheer bloody-mindedness, a refusal on our part to accept the full extent of Little Bear’s needs or a desire to plough on despite those needs. I don’t know. I think we might stick to self-catering for the foreseeable future though and maybe remember to anticipate some of the possible issues in advance.

But, you know, life is short and the world is wide. And some of us are more foolhardy than others.

Pressing Pause

Christmas, as usual, was an exciting time in the Bear household, as I’m sure it was in houses up and down the land. Christmas Eve was punctuated by frequent bursts of dysregulation – I remember it being so last year too. Christmas Day was good and Little Bear even managed to spend the afternoon with my brother’s lovely but crazy dog without getting overexcited. Before we knew it we had stayed out until 9pm which is unheard of for us (Little Bear usually has an early and set bed time with good reason).

In hindsight, our Boxing Day plans were overly ambitious. We had booked tickets to take the boys to their first ice hockey game in the early evening. When we did that I suppose we didn’t anticipate being out so late on Christmas Day but as it ended up that way, it meant us asking two late nights in a row of Little Bear which proved too much. We all enjoyed the game but Little Bear struggled with the transitions to the toilet and between the arena and the car. You’d think not much could wrong in those short intervals but you’d be wrong. Trust me, it’s surprising how much can be achieved by a dysregulated/over-tired/non-compliant child in a short period of time. If it weren’t so stressful I’d be impressed at his efficiency for hell-raising.

The following day I knew we needed to re-group. We needed to hunker down, rest, re-set. After sporting events on a Saturday morning (horse-riding and football respectively) we usually have a period of rest at the weekend. Both boys need it but Little Bear seems to get particularly tired from a week at school. The horse-riding is a good outlet for some pent up energy, allowing him a satisfying rest when he gets home.

Over the first days of the Christmas holidays we struggled to achieve that type of proper rest. Everything was too exciting. There was too much anticipation; too many things to look at and think about. By the 27^th we were starting to manage it. It was as though we had popped a balloon: Little Bear just kind of deflated and withered into a heap on the sofa. We watched films, played games, built Lego. That little rest turned into two days and then three and now we are on the fifth day of pressing pause.

Admittedly, neither boy has been feeling well. On Christmas Day, there was a huge cardboard box at my parent’s house from a chair my Dad got for Christmas. Big Bear got inside it, fell asleep and slept through his Christmas dinner. Whilst the location of the nap was notable, more so was the fact that Big Bear was sleeping in the day time – something he never does even on 7 hour car journeys. He hasn’t been well since and over the past couple of days Little Bear has also grown increasingly pale, culminating in middle of the night vomiting last night.

Obviously it’s rubbish for the boys to be poorly during their Christmas holidays. However, I have to admit to secretly liking being holed up together. I am loving the fact we have gone back to basics: quality time spent together. Because no one has much energy, I am not inundated with complaints of boredom. We have several ongoing Lego builds. Big Bear has completed a big superheroes set and Little Bear is slowly working his way through a mammoth Ninjago one. Santa evidently thought it was time to challenge him beyond a set which can be built in a day. So far, his perseverance and resilience have been impressive.

We have played Pit, Uno and Mouse Trap altogether several times. Grizzly and I have watched a few films while the children have been in bed but since then we have played games too: Boggle, Dobble, Bananagrams, Countdown.

We have done some excavating (with a new set that has buried dinosaurs and all sorts in a faux volcano), coloured the table cloth and shot at Big Bear’s new target machine that blows polystyrene balls in the air. I like the idea of getting things used. It can be tempting to buy a whole stack of presents then be so busy going out and about that nobody has time to take them out of the box. I want to see children playing with toys, books getting worn, games getting tired from use.  

We have tried to master the boys’ new UKick thingamabobs; we have read our new books; we’ve tried to get a little fresh air when children have been up to it. Although it does sound like we’ve returned to the 19^th century, there has been screen time. Not too much, but enough that we haven’t had to get up too early. There has been a lot of pyjama-wearing, stove-lighting and eating.

There has been next to no socialising, planning or organising. I have not concerned myself with diets, step-counts, homework or to-do lists in any form. I know that our Interscotia has not been at all rock’n’roll but I honestly believe in the power of a pause. Doing nothing has been restorative on many levels. In fact, great swathes of time can be passed simply snuggling one’s children. Nothing gets done: the house is a hard-working tip, but it’s lovely. The children need it and we need it.

I’m not sure if everyone’s home is like ours but we are usually stuck on a hamster wheel of school – washing – shopping – organising – school – football etc. It never really ends. Grizzly works ridiculously hard and I’m not exaggerating when I say there are weeks when we barely speak to one another. It has felt more important than ever this year to just pause for a little bit. I know many people will be out tonight – all dressed up, going to an expensive venue, drinking cocktails. They probably look at us stuck in the house for the fifth day in our pyjamas with pity. I’m filled with JOMO though (Joy Of Missing Out) because our pause is lovely. I wouldn’t swap any of it for uncomfortable shoes, alcohol and a noisy venue.

Don’t worry, I’m not turning all hermit-y for 2019 (no more than usual, anyway), this is just a temporary intermission between the mania of the previous year and whatever is to come next. A time to rest and rejuvenate: ready to hit 2019 running. Naturally, all this pausing has led to some reflection too. I’ve been asking myself whether I’ll be setting resolutions or not. Last year, because I had recently left the NHS, I set myself some specific aims for the year because I was a bit lost and didn’t quite know how to measure my success (or lack thereof). I knew I didn’t want to measure myself solely against the ironing pile so I tried to be more constructive. Last night, I went back to those aims to see how I’d got on.

If you can’t laugh at yourself then who can you laugh at? Many of my targets are pretty laughable; as are the results. One was, ‘keep bonsai tree alive’. It’s dead. Another was, ‘grow baby melons’. You might have predicted this, but they’re dead too.

I set myself targets for monthly blogging figures which I didn’t meet and ones for increased annual figures which I did. One major aim was, ‘to get a publisher or a literary agent’. Well, I didn’t achieve that. And therein lays the problem with New Year’s resolutions – as much as I wanted that to happen, I didn’t really have full control over it. Maybe I should have made New Year’s Wishes instead. But that’s a bit airy-fairy and what’s the point? Refusing to feeling thwarted and as though my year was a waste of time, I considered instead the efforts I had made to work towards that wish. I considered the number of submissions I had made, the times I had put myself out there, the times I had picked myself up after rejection and tried again. I’m realising that writing success rarely happens overnight. It might not have happened in 2018 but I have made connections within the writing world, become more practised at writing itself, made forays into fiction and braved the world of writing competitions. I have taken some leaps of faith. There are some natural next steps – make more submissions, finish my novel, get braver with seeking feedback etc. Those things are my aims for next year. I’m not sure they really classify as resolutions and that’s fine with me.

The other thing is that New Year’s Resolutions don’t account for the unexpected things that might happen in your year. It doesn’t say anything in my aims about winning blogging awards but that happened and was very much a highlight of my year. It rather brings into focus things such as viewing statistics – I’d take my award over bigger numbers any day. It makes me wonder how we should measure our success, the pressures we put on ourselves and which are the things that really matter anyway. I have written myself a note which says, “don’t get hung up on viewing figures” as a handy reminder from Zen Paused Me to Cup Half Empty What On Earth Am I Doing With My Life 2019 Me (she will come, it’s inevitable).

Half way through the year of 2018, I stopped checking myself against my aims and started listing my achievements each month. I made myself write small things e.g. ‘submitted short story to x competition’ or ‘delivered successful workshop’. I keep it in a notebook that no one else is going to read so I can be free and honest and not worry about sounding boasty. I have found this extremely helpful because at the points where I start thinking I’m wasting my time on a career that will never be, I make myself read it back and remind myself that good stuff has happened. Us humans (amongst other flaws) seem to be programmed to remember all the failures, low-points and bad bits and somehow give them greater weighting than the successes. I’ve found my lists really useful for maintaining some balance and stopping catastrophising in its tracks. I shall certainly be continuing.

Anyway, I’ll end where I began. My main priority for 2019 is for my family and friends to be healthy and happy – stripped back, that’s all there really is. I’m also going to endeavour to reduce our plastic use further and stop distracting myself with shopping/Twitter. Family, friends, reading & writing. That’s where it’s at for 2019. And now, if you’ll excuse me, I need to get back to doing nothing.

 

Loads of love for 2019,

xxxx

 

 

Working on Interoception

Back in March I wrote this blog: Interoception   At the time, I promised I would have a go at working on interoception with Little Bear at home and I would report back about how we got on. Another random Twitter chat has prompted me to do that this week so here we are!

I began Mission Interoception by buying this book because I struggled to find any practical information on the internet:

It is quite informative but it is also very expensive for what it is. I was expecting a sturdy text book for the £24 I paid, not a thin novel sized book which I was able to read in one sitting. Although the content is quite helpful, I didn’t find it revelatory. The basic premise of interoception remains the same as I thought before: we need to get children more tuned-in to things that are happening inside of them. In order to do that, we need to get them thinking and talking about what’s inside. A key part of interoceptive therapy seems to be describing how different parts of the body are feeling and this is where we ran into a bit of trouble. Little Bear has well-documented speech and language difficulties and it soon became clear that coming up with lots of different adjectives to describe parts of his body he doesn’t really know are there is fairly challenging. In fairness, if I make myself think of how to describe my stomach for example, when I’m hungry, I’m not sure how many adjectives I can really come up with either. Working on interoception has several pre-requisites I’ve discovered and good language skills are one.

The book gives quite a few different activities to do but they are essentially all just different ways of making a child think about a specific body part (a grown up points at different bits with a light sabre/ you draw a picture of your child & point at different bits of the picture etc.). As with most things, I picked the bits I liked the most or thought would be the most fun or the most practical and we had a go.

The book suggests that a good starting activity is to draw around your child (who will be lying on a large piece of paper – wallpaper or lining paper is ideal), get them to help you mark their different organs on their body map and then talk to them about how different ones feel in turn. We enjoyed the drawing around each other part – I roped Big Bear in too to make it a bit more fun:

 It was at the stage of marking the organs on the map that I realised there was another pre-requisite skill that we were slightly lacking. Your child kind of needs to know what’s inside of them. Not complex anatomy but stomach, lungs, heart, brain, bladder, bowel are all fairly crucial to this. Little Bear seemed to find the drawing around each other part quite overstimulating so between that and not really knowing about the organs, he quickly lost attention for the task. If you were hoping for the kind of blog post where everything goes swimmingly and I resolve my child’s difficulties overnight, you have come to the wrong place.

My conclusion after this was to shelve direct work on interoception for a while so that we could fill in some anatomy blanks. Little Bear’s birthday was around this time and always wanting to get something a bit educational in amongst the fun stuff I had got him this:

 I found this a much better way to think about insides with Little Bear. The model is good because you can take the transparent plastic ‘skin’ off then ‘dissect’ the man with the tools provided. There is a labelled sheet with blank spaces for you to match the 3D organs up with their pictures. It felt quite a bit more rock’n’roll than drawing on the paper which meant it grabbed my boys’ attention more and they engaged with it better. Over time I linked the items they were removing from the unfortunate plastic man to their own body parts. Sometimes I would hold a bit up and ask if anyone knew where it was on their own bodies. We began to talk about what the bits did and how they worked. We re-visited this task every so often to re-inforce the information.

 Alongside this, the book I bought advocates working on interoception ‘on the fly’ i.e. just at random while out and about, not solely during an interoception task. It also suggests trying to apply interoceptive learning at points of dysregulation, though it points out this is difficult. I realised I was guilty of identifying out loud that Little Bear was hungry or needed the toilet but I wasn’t really arming him with the skills to identify this himself. I tried to add in a bit of interoception on the fly at these points. For example, I might say, “We need to get up now; its breakfast time. How is your tummy feeling?” Little Bear might struggle with the vocabulary so I would sometimes give him a choice of possible descriptions e.g. is it full or empty? If his tummy rumbled, that was brilliant and an opportunity I tried to seize. The first time I tried it, I said, “What was that noise?” and Little Bear very earnestly replied that it was a bear. I suspect he knew full-well what it was but it is possible, with my interoception hat on, that he couldn’t identify that the noise was coming from inside of him.

Over the last months I have tried to tune him into these little signals, as well as things like how his behaviour changes when he needs the loo or is hungry. I describe the changes I see to him and try to get him to feel them e.g. “You are talking really fast and jiggling up and down. I wonder if that could be because you need the toilet? How is your bladder/bowel feeling?” I might put my finger on his tummy to help him focus on the right place.

I think the most significant thing we can now (sometimes) manage is getting Little Bear to pause, even for a few seconds, to consider his body. I can’t pretend it works every time or that when he pauses he can read the signals but certainly sometimes he is now able to stop and try to tune in. This doesn’t sound like much but I think that interoception is something that takes a long time to change. We are chipping away at it and maybe in a year’s time I’ll notice bigger changes.

One thing that has changed is that Little Bear has become aware of his heart and how fast his heart is beating. We haven’t targeted this directly so I do think it’s a sign of improved overall interoception. The fact that Little Bear is able to lie still and be quiet enough to notice his own heart beat feels like a positive step in the right direction. He can use his breathing to slow it down and notices when it speeds up, neither of which he could do before. He seems to have gained this awareness by himself, perhaps as a result of being more aware of where his heart is and what it does. I have seized on this where possible to link the changes in his heart rate with his feelings/emotions, especially when he feels angry. I have explained why I encourage him to do his ‘Ronaldo breathing’ at these points.

A couple of times, Little Bear has been getting grumpy and heading for meltdown when he has managed to say, “Mum, I think I’m grumpy because I’m hungry”. This is brilliant and obviously I have fed him straight away. It’s far from consistent though and I would say that the majority of the time it is still down to Grizzly or I to interpret his behaviour to figure out things like hunger or needing the loo.

With regards toileting, this is the area we have had least success with in terms of interoception. The majority of the time Little Bear doesn’t seem to know he needs a wee until he is wet and then sometimes he isn’t always aware. This is the area that would make the biggest difference to him but I wonder if there is a hierarchy within interoception, with some body parts being more difficult to tune into than others.

Overall, I would say we are making progress but it is slow and steady. I guess it might be quicker if I chose to focus all my efforts on interoception for a 6 week period and did a little every day. It is hard to give it that level of focus though when we have so many other areas that also require our attention.

On a related but slightly tangential note, I have noticed significant improvements in Little Bear’s sensory seeking behaviours recently. I suspect it is since he has had his Our Gym Bar Invention. Initially he used it all the time, for lengthy periods – mainly hanging upside down – but he rarely uses it now. I wonder whether he has had sufficient proprioceptive and vestibular stimulation that he has been able to re-organise those brain systems. It was particularly noticeable during the summer holidays because there were quite a lot of days when he didn’t do any vigorous exercise, just walking, and he was absolutely fine. That could never have happened even a few months ago. Every day he needed a good run around or swim or bike ride or to climb something or we would have been in for trouble. I can genuinely say that has changed which fills me with hope that sensory diets do work. We still see dysregulation but it’s less physical than it was.

My belief is that interoceptive work will be effective too but it’s a long game. Perhaps if I’m still blogging in a year’s time I could give you another update then.

 

 

 

 

 

 

 

 

 

Be Prepared

I’m no Boy Scout but, as an adopter, I do think it might be worthwhile nicking their motto. When you look up its meaning, Wikipedia says it means “you are always in a state of readiness in mind and body to do you duty”. Now, although I do not consider adoptive parenthood to be my ‘duty’, I have committed myself to it and do find myself in a constant state of readiness. I couldn’t tell you what I’m ready for necessarily (often a lie down in a darkened room) but I do tend to expect the unexpected.

I wouldn’t say that Little Bear is unpredictable. Well, I sort of would. He’s predictable in that I know the full range of behaviours he might display and I know him well enough to anticipate how events or states might impact him. I can often predict what he might do next or what he might say or how he might react. However, what none of us can really be sure of is what kind of day it is likely to be when he wakes up in the morning. I’m starting to realise that there can be quite a variance. Also, no matter how well we know Little Bear, he will always have the ability to occasionally throw in a curve ball or say or do something out of the blue. As well as this, even though I can often anticipate his behaviour, it is still the sort of behaviour you should be ready for. For example, if your child is a runner, you can’t go round being surprised when they run off. You won’t expect them to run off every second either but you will always have at the back of your mind that they might. You’ll be prepared to grab them or sprint after them, just in case.

On Sunday, I had a lovely afternoon with Little Bear. Big Bear had gone on a playdate then out for tea and to the cinema with Grizzly. Little Bear and I stayed at home. We got the Lego out and sat in the playroom for ages building things and pretending. Little Bear was calm and played happily with the same game for an hour or so. When I could tell he was tiring, I made him some tea and let him have it in front of the TV for a rest and also because his brother had gone to the cinema. Afterwards I ran him a bath and we had a big game of floating racing cars. He read his school book then I read to him. He chose Green Eggs and Ham and realised after a few pages that he could actually read that too. He kept saying “no, I can read this one Mum” in a slightly surprised tone and continued to prove his point until he had read the last 30 pages or so. He was an absolute joy. We had a lovely time. It felt like quality time. I felt he had benefitted from us being on our own. All was good. I really enjoyed him.

On Monday morning, I was lulled into a false sense of security. My prediction of Monday was based on Sunday’s rose tinted lenses. This was foolhardy. I should have been more prepared.

Monday wasn’t a really bad day but it was very different day. I’m pretty sure that Little Bear didn’t stop talking. At all. All day. I’ve read somewhere about ‘verbal scribble’ which is a very apt description. Little Bear verbally scribbled all the live long day. We went to the park. We wanted to walk. Little Bear wanted to play football. We played football then we walked. He didn’t want to walk. We were ready to leave for lunch. He didn’t want to leave or get out the tree. We went for lunch. He didn’t want lunch; he wanted to go to the park. You get the picture? Everything was a bit of a battle and he REALLY wanted to do a lot of things. Each time we did the thing, he REALLY wanted to do another thing. It was as though nothing satisfied him and he was constantly seeking life’s secret elixir, without any success. It was a tiring, trying of patience kind of day. It also involved loudness, constant interrupting, difficulty sitting still and a need to be fed otherwise eating wasn’t going to happen either.

I should have been prepared for the presence of dysregulation because it’s an omnipresent possibility. I’m not sure why I wasn’t but it’s certainly nicer to begin the day assuming you are going to enjoy your child rather than count down the minutes until bedtime.

Based on how Monday went, I wasn’t too excited about today. Grizzly was going to be at work and I was mostly going to be having 1:1 time with Little Bear.

This morning, he surprised me with one of those unexpected, out of the blue curveballs: a life story chat at 7am. There is nothing like a mention of birth siblings to wake you from a sleepy stupor and get your ‘be prepared to answer whatever array of questions might be coming your way hat’ on.

Life story work is one area I can’t really predict with Little Bear because it happens so infrequently. Months go by with no mention at all and then all of a sudden, bang, a big question when you least expect it. However, because we are adopters and because we know he might do this now and again, it is in the backs of our minds and we are sort of prepared for it in an expecting the unexpected kind of way. So today started with perusing of the life story book and the fishing out of some photos. I think the chat went okay. Little Bear seemed satisfied with his information and I didn’t go away deriding myself for having said the complete wrong thing.

We dropped Big Bear off at my Mum’s for his grandparent time and headed into town together. Having not had particularly high expectations of the event, I was relieved that we had a lovely time again. I suspect that 1:1 is much needed for Little Bear and hence he generally copes better in those situations. He needed new shoes which put a spring in his step; I tactically fed him toast at the right time (and a hot chocolate in an espresso cup which is quite possibly the cutest drink a child could have); we stuck stickers; we coloured; we stroked a rabbit; we went to the library. It was lovely and I really enjoyed him. Little Bear climbed a few things and tried to swing on a few things and found it hard to sit still. But I knew he would: I was prepared.

Sometimes situations arise that with the best will in the world you can’t anticipate and they can lead you to question what you really are prepared for. When we got to the library, rhyme time was on. I didn’t know this; it was a coincidence. In this instance, rhyme time was full of parents and very small children – babies and young toddlers. The group were singing nursery rhymes and listening to stories. Little Bear was rooted to the spot, transfixed. Initially I didn’t pay him much attention, encouraging him to look through the books. When I realised he was in a bit of a trance, I watched him, watching them for a few seconds. He looked shy, curious and a little mesmerised. Having just read The Boy Who Was Raised as a Dog by Bruce Perry, it was fresh in my mind that children who have been neglected have often missed out on early rhythmic interactions and the singing of lullabies and nursery rhymes. It was also fresh in my mind that older children still need to experience these things in order to heal their trauma.

I looked at him looking at them and tried to weigh up the situation. He was twice or even three times the size of most of the other children. I had no idea whether you were meant to officially join the group or pay. I wasn’t really prepared for this situation. However, I concluded that the bottom line was that Little Bear, whether in the body of a lanky 6 year old or not, was developmentally well matched to the group and as uncomfortable as that felt, I would need to suck it up. “Do you want to join in?” I whispered. The answer was basically yes, so long as I came with him. I crouched beside him, to make us slightly less conspicuous, as he sat on a chair in the group.

Little Bear loved it. He was completely entranced by the songs and sat really well. He couldn’t have managed to join in when he was 3 or 4 and probably not even 5, but at 6, it was just perfect for him. Having missed out on all those early experiences and having had such significant language difficulties, Little Bear doesn’t actually know any songs. Some sound familiar to him but he doesn’t know the words well enough to sing along. That doesn’t stop him trying and results in a tuneful hum with some louder words thrown in for good measure. I watched him side-on, feeling a little embarrassed but making myself get over it, while he sat straight-backed, earnestly joining in, wide-eyed and trying his very best. I loved Little Bear so much in that instant that my heart hurt a little bit. I wasn’t prepared for the situation but I am prepared to do whatever I can to help him.

The next second his hand was going up to suggest a rhyme. I was intrigued by what he would say and slow to anticipate what was inevitably coming next. Little Bear suggested ‘jingle bells’ and broke into song and he was about two lines in when I woke from my daydream and realised this wasn’t going to be the clean version. Yep, Uncle Billy and all that…

The Scouts are right: be prepared. You don’t quite know what might be coming next.

 

 

Unwanted Changes

Things have been going really well for a few weeks here. That way where you begin to think you might have cracked it and that having no specific difficulties is the new normal way of life. I wasn’t getting complacent about it; if anything it was making me feel a bit uncomfortable and suspicious, not because I want to have difficulties but because it seemed a bit too good to be true. About a day after having that thought, some problems predictably began to arise. I don’t think it is anything major at this stage, hopefully not, but we are at the point of thinking Little Bear’s behaviour might be escalating and we are keeping a close eye on what’s going on.

There are two issues, both school based. At the start of the school year we had some School Worries and then various things happened to resolve them (see Alleviating School Worries). Since then there have been niggles but generally an upward trajectory with Little Bear and Mrs C, his TA, getting to know one another better. Over the past two months or so I would say they have got into their groove. Little Bear feels safe with Mrs. C; he listens to her and accepts her authority. Mrs. C has come to understand Little Bear and what he needs and how to help him. Consequently Little Bear’s behaviour has been very settled and he has made fabulous progress. We have been very pleased with how everything has been going.

Unfortunately, Mrs. C is now experiencing some personal issues; a member of her family is very poorly and understandably she needs to take time out to care for them. She is still coming in most days but sometimes only helping Little Bear for an hour before leaving. Obviously I know it can’t be helped and I really feel for her, having been through it all last year with Supergran, but at the same time, with my parent hat on, I’m a bit gutted. Consistency is so important for children who struggle with attachment and trauma. It has taken a long time for this relationship to be properly established and just as things have settled seems an unlucky time for disruption to happen. Mrs. C is Little Bear’s safety net at school now. He knows she is there to help him and without her I suspect he is a little lost.

We are lucky in that Little Bear has made good progress and can now cope with a bit less support and still get some work done, where he couldn’t have managed to earlier in the term and would have become very disruptive. However, we are all too aware that things can escalate quickly when much needed support is taken away. We are keeping an extra close eye on how Little Bear is and checking in with his teacher more frequently.

The school are not currently covering Mrs C’s time when she isn’t there as it likely to be a short term situation but we are concerned that they may need to if Little Bear shows us he isn’t coping.

When I picked Little Bear up yesterday he appeared dyregulated and really struggled to listen on the way home. He did daft things like hide in someone else’s front garden and tried to put a Hula Hoop in his ear that he would not normally do these days. Could this deterioration in behaviour be a sign he isn’t coping quite so well as we thought?

Well, it could, but equally it could be due to the other school issue that we are also concerned about. For some reason that I can’t fathom, the school have changed the entire dinner menu. They have changed it on the premise of it becoming healthier. In practise, they have removed all carbohydrates. Cauliflower rice or celeriac mash anyone?

I’m all for healthy eating and children having their vegetables, of course I am, but I do think this menu has gone about three steps too far. Little Bear loved buying some toast at break time and I always encouraged it because he gets very hungry and I felt it was regulating for him. I am sure there is some evidence about children who have experienced trauma needing more fuel because they expend so much energy trying to stay within their window of tolerance (if anyone knows what I’m on about please point me in the right direction). I also think Little Bear has to work harder due to his Developmental Language Disorder, another reason to keep his energy levels up.

Anyway, needless to say he can’t buy toast anymore because bread is the food of the devil or some such nonsense.

The lunchtime menu now has one choice only so I guess you eat it or you don’t. Previously there were always two choices and personally I feel there still should be – aren’t children allowed to have preferences? My feeling about the food now is that it would probably be delicious for me, a grown up with developed taste buds, who is conscious of my waistline but either I have failed as a parent or my children are lacking in some way as they are very unlikely to eat it. I don’t know many children who would eat harissa lamb or Greek salad or greek yoghurt and berries for every pudding, to be honest. Apparently they have done it on purpose to get the children tasting more things.

The thing is I feel as though they have misunderstood the function of a school lunch. In my eyes yes, it should be as healthy and fresh as possible, but it should be appealing to most children because the most important thing is that they eat it, fill their tummies and are able to approach the afternoon well-regulated and able to concentrate. I think that pushing boundaries and trying things can happen at home or during special events at school but the last thing I want is for Little Bear to push his posh nosh round his plate, not eat any of it and spend the afternoon swinging from the lampshades. Being well-fed is crucial for Little Bear’s behaviour regulation. If he is hungry he will not be able to control himself and he certainly won’t be able to learn.

I feel as though the school has inadvertently created a very exclusive menu which will inevitably exclude many children. There has been no consideration for children who may have restricted diets due to underlying conditions such as Autism or children who have had limited life experiences. Before Little Bear came to us, he didn’t eat any vegetables and perhaps only one or two fruits. The fact that he will happily eat a range now feels like a success to me; I don’t feel the need to push him beyond his comfort zone and I don’t appreciate the inference that my child (or my parenting) is somehow lacking by him not wanting to eat anything on the exclusive school menu. I feel as though it has somehow become an elitist basis on which to separate the parents – those who have succeeded in getting their children to eat like grown-ups and those who haven’t. Bring back jacket potatoes and roast dinners I say, are they really that detrimental to our children’s health?

As an aside, the children are no longer allowed to bring a cake in when it’s their birthday either which I find very sad. I know we are meant to be concerned about childhood obesity but neither of my boys sits still and Little Bear has a six pack to be jealous of. I think he can eat a slice of cake now and again without any of us getting too concerned.

Anyway, menu-related rant aside, I am mainly concerned about Little Bear’s wellbeing and him pushing his friends about and trying to shove crisps into his ears could well be due to hangry-ness. Little Bear not eating his lunch could well be a disaster and could easily lead to an escalation in his behaviour. I am trying to keep a close check on whether he is eating at school, though it is proving difficult as, according to him, yesterday’s lunch was soup and porridge which even by the new menu’s standard seems unlikely.

I know change is unavoidable but on this occasion I really wish they’d left things well alone. For our children, those who have been through enough already, small things can be big things and medium-sized things like not having your trusted adult or being expected to survive a day without carbs can be enough to upset their wagons completely. Here’s hoping this is just a small bump in the road and not the next dip on the rollercoaster.

Sensory trial and error

One of the biggest priorities at our house these days is helping Little Bear with his regulation. It has always been an issue but I think because other things have settled down, it has come more to the fore. I have been experimenting with various sensory hacks to see what works and which ones we can use routinely to improve things in our daily lives. Here are some things we have recently tried and how we have got on:

Regulation at the table

Little Bear has always struggled with sitting still. He’s fine on a sofa and can sit for quite a while but finds sitting at the kitchen table for mealtimes particularly tricky. He is better on our wooden bench than on any of the chairs but still tends to kneel up and change position a lot and get down a lot. I have been trying to engage Little Bear in his own regulation more so I recently asked him why he moves about so much. I had no idea if he’d have enough insight to be able to tell me but it seemed worth a try. He said he didn’t like being too low down. We then experimented with putting various items on the bench to make him higher and a bit more comfortable. Several were no good or too unstable but in the end we settled on a beanbag. We can tuck it through the gap in the back of the bench so it stays in place and Little Bear has given it his seal of approval.

I have to say it has been pretty miraculous in its efficacy. Little Bear is certainly able to sit still for much longer with it and doesn’t change his position half as much. Crucially Little Bear prefers it and goes looking for it if I have taken it off the bench for any reason. My feeling is that children will show us when we are getting the sensory input right for them and this hack is ticking all the boxes. I have been considering a wiggle and sit cushion for a while but I don’t think we need one, the beanbag is perfect.

Regulation when out and about

This is the biggest challenge for us and one I would really like to come up with a solution for. We generally notice Little Bear’s difficulties with regulation when we go on a day trip somewhere or go somewhere new. I guess there might be an element of anxiety underlying the behaviour and we certainly feel Interoception has an impact. We are continuing to work on that but it is not a quick fix and I don’t think we are ready to feedback about how it’s all going just yet (but I will when we’ve made more headway). In the meantime, we have been experimenting with things that help in the instant of dysregulation, while we are waiting for longer term solutions to work.

If we are having a dysregulated day out, Little Bear continually seeks movement, which can be unsafe depending where we are. Often we let him run where we can or swing or climb to his heart’s content. I realised on a recent day out though that all the movement doesn’t actually seem to help, if anything, it gets Little Bear more and more dysregulated. Therefore I hypothesised; we needed to add in more calming elements, rather than encouraging the seeking elements.

I remembered that we used to use a rucksack for that purpose so we have re-introduced it. On the first attempt it didn’t go particularly well as the straps were a bit loose and kept coming down Little Bear’s shoulders which annoyed him. The next time we tried a different bag which has a little chest clip to keep it in place. It was a mixed outcome. We could certainly tell the difference in Little Bear’s behaviour – the weighted bag did calm him and stopped the running and swinging almost completely. I would say this was a fabulous outcome apart from one crucial factor: Little Bear doesn’t like wearing it. I don’t want him to think it’s a punishment of some sort and the fact he doesn’t like it makes me think we haven’t quite got it right sensory-wise. I suppose we need to experiment with the weight of the bag; how long he wears it for etc. I know that when I was taught about weighted blankets, the rule of thumb was always to remove them after 20 minutes as otherwise the body modulates to the weight being there and the effects cease. However I have played around a bit with just letting Little Bear wear the bag for a bit then taking it off but I feel as though the effect goes with the bag and as soon as it goes, he’s back to seeking movement again.

I also wonder if there is another way to give him ongoing proprioceptive input that doesn’t involve wearing a bag? I know you can get pressure jackets but I feel as though he would be too hot. Please make suggestions if you have any as we are certainly in the market for trying something else.

Regulation at bedtime

Little Bear has one of those heavy cuddly toys that is filled with sand, I think it’s a large newt and I have been experimenting with that lying on him to help him calm at bedtime. Again I would say it works a little but then he chucks it on the floor!

In the winter if Little Bear can’t get to sleep, we have a heavy knitted blanket that he sometimes likes me to put over the duvet on top of him which works well. It is generally the sensory approaches that Little Bear is collaborative in that work the best. He will tell me when he does or doesn’t want the blanket and I assume that relates to when he does or doesn’t need it.

I have noticed recently that he has a big fluffy blanket on his bed at the moment and he likes to get all cosy inside that, especially if he hasn’t got his top on. I feel as though it would be quite an unpleasant sensation but it obviously works for him. Looking at how children self-soothe can be a key way of discovering sensory hacks that work. Little Bear still has comfort blankets in bed. They are muslin squares and it is the label that he likes – he strokes his lips with it which seems to soothe and calm him. I can’t think of anything worse and he often tests it out on me knowing full-well that it will make me squeal in discomfort. I suppose it’s a good way into talking about how everyone’s sensory needs are different!

I am now wondering whether proprioception is the best avenue for calming for Little Bear or whether the right kind of tactile stimulation would work better for him. How would we go about providing that whilst walking around a zoo or museum I wonder?

This has definitely been a post with more questions than answers (apart from beanbags, they are an answer) so I apologise for that but if anyone has any clever solutions I’d love to hear them.

Our Gym Bar Invention

You know your child has some sensory needs when you have one of these in your house:

 

 It is not exactly an off-the-shelf product; it is several products that we have combined to create a gym for Little Bear. The basic product is a Pull Up Mate pull-up bar. We got that first because Little Bear was spending quite a lot of time hanging from things. There are not many things in your average household that are safe to hang from though and he tended to resort to the side of his cabin bed which we weren’t too keen on. We decided a free-standing pull-up bar would be safer and we chose this one because it seemed the sturdiest available.

The bar is height-adjustable and we started off with it being half the size it is in the pictures. Little Bear loved it and soon came up with several different moves: hanging, swinging, doing roly-polys in the air, hanging vertically upside down, hanging from the bar like a sloth and moving hand over hand along it, from one side of it to the other. I guess all the moves were giving him both proprioceptive and vestibular feedback, which he seeks.

The only thing I had to be careful of was that Little Bear couldn’t identify when he was getting tired or had satisfied his sensory needs and would just keeping swinging and hanging for ages and ages, tipping himself into over-stimulated territory (see Interoception for more on why this might have been happening). To begin with he would get more and more excited and he would need one of us to tell him to stop and do something else. I do think that has improved with time though and although we do still need to step-in, Little Bear is getting better at identifying when he needs to stop. He is also calmer when he is on the gym and is now using it more functionally to regulate himself. We’ve noticed that when he is generally dysregulated, there are fewer times when he prowls about the house looking for trouble. Now, he tends to go to his gym instead which is certainly preferable.

When it was Little Bear’s birthday we didn’t really know what to get him so we ended up getting some additional bits and bobs to make his gym more exciting. In order for that to work we had to make it full height. We have added a rope ladder, which could be tied onto the bottom bar but Little Bear likes it loose; two hoops and a swing.

 It is fair to say it made his day and was a better present for him than a traditional toy. He quickly invented some new moves including climbing up the frame itself in a star fish shape and then jumping to hold onto the top bar. I frequently have to close my eyes because he does things you would never think possible and even Grizzly gets a bit of a fright sometimes. However he is very lithe and strong and these things seem to come naturally. He is very good at having enough points of contact and at landing safely.

Little Bear also likes to climb up and through the ladder; to do roly-polys on the hoops; turn himself upside down from the hoops and create sequences of moves from one piece of apparatus to another. He often challenges the rest of us to copy his moves but none of us are capable!

When other children visit they are very attracted to the gym too but it is definitely quite over-stimulating for Little Bear if there is more than just him on it (its fine if Big Bear plays).

Another crucial addition with the birthday package was the crash mat, for obvious reasons! It’s one of the fold up gym ones – there is a lot of choice on Amazon. Little Bear also likes this as a place to have a little lie down, I found him there watching TV the other day.

The only other safety factor to consider is the weight of the child using the gym. The pull-up bar itself is suitable for adults up to 110kg but obviously it isn’t really designed for people swinging around on it. Little Bear doesn’t weigh much so it copes with him fine but it does tip a little if Big Bear goes on the swing or ladder. We are going to add some tent weights to the bottom bars for a bit of extra stability but in general I do think the whole thing is more suited to someone on the lighter end of the scale.

Although it looks like a thing of torture and is not what you would expect to find in someone’s conservatory, we are very pleased with it as a purchase. It wouldn’t be for everyone and it does take up quite a bit of space but I wanted to share what can be done. We had been looking at these types of thing (see below) but they are huge and I don’t really know who could accommodate one in their house whereas our smaller DIY attempt works well for Little Bear and would be equally as good outside during the summer.

The whole process has made us realise how talented Little Bear is in the gymnastic department. He doesn’t currently attend lessons as he would struggle with waiting to take his turn and with listening. I’d be interested to hear if anyone has tried 1:1 gym lessons or anything similar that we should consider.